"I'm a cancer patient today."

I just returned home from a wonderful, much-needed vacation with my family. It was a great time. My body was cooperative, and thanks to a six week chemocation compliments of Doc W, even my feet were willing to play nice.
I walked for 6 days, I'm talking serious, real walking from one side of a massive theme park to the other. Acres of ground was covered. I must admit ... theme parks are so much more fun with a little Tramadol on board. I spent time with my kids and hub and wasn't a "cancer patient" in SoCal. There I was just mom, wife, lover, friend, tourist, person, me.

Today, I'm back at the clinic to start up my maintenance chemo. I'm so sick and tired of being a cancer patient. My one-year cancer-versary is fast approaching. And aside from three short but wonderful chemocations, the last year of my life has been the hardest I have ever endured. And sadly, there's no end in sight.

Carry on,
Kristin

"$$$. Cancer treatment equals unspeakable amounts of $."

I saw this while browsing Facebook the other day. The numbers listed are staggering. And while I can tell you that these numbers are shockingly accurate, I hate to talk about how financially draining my cancer treatment has become. It's upsetting to even think about.

Instead, I watch my husband work himself to the bone to keep our insurance in good standing and to keep our bank account in the black. I stress until I'm sick over situations that I have no control over. I worry about the long-term affects my treatment will have on my family financially, even after I'm gone. I worry about my children and how my treatment will take away from their futures financially, i.e. college, marriage, etc.

I thank my husband every day for working the way he does. He has basically saved my life by providing me with medical insurance and money for co-pays and that Godforsaken 20% out of pocket. He works so hard, words can't express the gratitude I feel for him and what he has done for me. 

Carry on,

Kristin

"Stupid Cancer."

I'm a young cancer patient. They consider anyone under 40 to be a "young" cancer person, and since I look 30 and occasionally act 20, (I was diagnosed at 41), I allow myself to fall in to this category.

More importantly, I.Love.This.Website. 

Stupid cancer indeed.

Carry on,
Kristin

"This Girl Inspires Me!"

She's funny and smart and beautiful and so strong. I've never met her. I probably won't ever meet her. But I feel like I know her and I'm forever blessed by her example of strength and positive-thinking.

Afton.

Carry on,
Kristin

"Maintenance Chemo, Here I Come."

PET Scans are fun. Not. What is a PET Scan you ask? It's this-> Definition. And this-> Gross. And this-> Ahhh.
It is also lots of these -> Results, which can be a good thing and a bad thing, too.
After 7 months of absolutely brutal chemotherapy treatment, I had a follow-up PET Scan. Knowing what to expect the second time around made the actual scan much more endurable. Waiting for the results ... that was the worst part for me.
So, we (my mom, hub, and myself) show up at Doc W's office to discuss the results, and surprisingly, the results were mostly good. All four spots of my cancer, including those scary mets on my liver, were "resolved" (fancy medical term for "all better"). They found some suspicious activity on my abdominal wall that Doc W took before the tumor board. The activity was determined to be my ovary just doing it's job.
So ........ with "No Evidence of Disease", Doc W decided that he wanted me to begin "maintenance" or "safety" chemo.
His theory went a little something like this.
"Five years ago, ten years, we'd treat you for the active cancer inside your body, then depending on whether or not your body responded to the chemo, which your's did, we'd sit back and wait for the cancer to return. Now, we can be a step ahead of the cancer. We can be in control of whether or not the cancer returns." ~Doc W
His theory makes complete sense to me. And my closest friends and confidants know that I look at chemotherapy treatment as a sick-form of a security blanket. As long as I've got chemo in body, the cancer can't come back, right?
Enter my "maintenance chemo" regimen:
~ An infusion of Avastin, so I can bleed relentless and have a little pain.
~ 28,000 mgs of Xeloda, aka 5FU pills. I don't take 28,000 mgs at once. I take 1,000 mgs in the morning and evening over a 14 day period. This way, my feet and fingertips can burn and blister for days on end. I can stumble around in a fatigue-laced stupor, and spew toxic sludge from both ends.
~ A seven day break, most spent dreading my next dose of poison.

I'm laughing as I type this. My sarcasm is at an all time high right now. You've heard me talk about 5FU and how bad it made me feel, how it was the most brutal of my chemotherapy drugs, how I loathed the pump that weighed me down for 276 hours of my life, and caused me to walk like I was a hundred years old. This drug that is so hard on me ... is the main drug of my maintenance chemo. Oh, my luck.

And yet, I know I'm strong enough to handle it. I'll laugh my way through maintenance chemo knowing that I endured 6 months of regular chemo that was 10 times harder than this is now. And even though I know I'm strong physically, I secretly worry if I'm emotionally strong enough to withstand this part of my journey.
Yes, it's slightly reassuring to still be in treatment, but that does mean I'm not a survivor yet? When do I get to say, "I beat cancer!"?

Cancer.net says, "The growing use of maintenance therapy may raise new questions about when people begin to consider themselves cancer survivors. For some people, receiving maintenance therapy after the first treatment may provide a sense of reassurance. However, other people may struggle to see themselves as survivors if they are still receiving cancer treatment. No matter how a person views the stages of cancer treatment, starting maintenance therapy is an important part of many people's treatment and recovery plan."

Honestly, I don't know if I'd rather still be in treatment, or if I'd rather be done and just waiting to see if cancer returns to my body. Either way, I'm still stuck in Chemotopia, limping around with a blue barf-bag in hand, and a tissue shoved up my nose while I try to enjoy my life from one day to the next.

Carry on,
Kristin 

"I'm In a Cancer State-of-Mind."

I just read this amazing article written by lutintoutnu.

It's poses the question: "Are we ever really cancer-FREE?"
If I had to answer that question right now, my answer would be no ... even though the cancer that was inside me seems to have been eaten up by the 6 months of chemo I just finished. I didn't have much active cancer inside me to begin to with, but ... but my latest pet scan results came back basically N.E.D. (No Evidence of Disease).
I should be doing cartwheels or cheering or something elated with that kind of news, but I'm not. I can't. Here's my theory why: CANCER isn't just a disease, it's a state-of-mind. This mental place is totally possible and quite frankly, reasonable considering what I've been through. If someone can be in a "New York state-of-mind", a "Cancer state-of-mind" HAS to apply, right? Que video below now.
Yes, my physical body seems to have responded to my therapy but my mind just sees statistics. It still hears things like, "You have blankety-blank months," and "Stage 4," and "Chemo for life." 
I want my mind to match my body. What my conscious is saying right now: "Please respond to the therapies I'm offering you, oh warped brain in my skull. Can't you see the the cancer's gone?"
What my mind hears: "Late-stage cancer is terminal. Late-stage cancer has an 80-90% chance of recurrence."
I don't think a day will go by--for the rest of my life--that I'll be able to just kick back and say, "Oh hey, all is well because I'm cancer-free." Even during this blissful chemocation I'm enjoying, the worry is still there. 
Lutintoutnu says, "It might not be all sunshine, rainbows or fluffy kittens but it is where I am at. Yes I am grateful for my life and my health but I want to be OK with this second stage of feeling scared, worried, and anxious. I can't quite explain why these thoughts are poisoning my mind ..." 
Cancer is a state-of-mind. That's why thoughts like these ones are constantly swimming around in my head. The worry is my mental poison. I hope this goes away or at least decreases over time. But I'm not counting on it. 
Of course, it doesn't help that I'm nervous for tomorrow. I meet with Doc W to discuss phase 2 of my long-term care plan. Wish me luck!

Carry on,
Kristin

"Skee-rew you. And other stuff."

Spoiler alert: This blog post is going to be ultra-feisty and borderline offensive. Skip if you're not in the mood. 

So, this morning I received a pm from a stranger on one of the colon cancer forum groups I belong to. The jest of his message went a little something like this:

"While I can appreciate that you're a strong, young survivor, your situation could have been avoided. Had you insisted on having a colonoscopy, your doctor might have been able to find the cancer when it was just stage 1 or 2 or maybe even pre-cancer. You really did yourself a disservice by letting it get to stage 4 at 40 years old."

ARE.YOU.SERIOUS?

My reply:

"Skee-rew you, P****61. You don't know jack about my situation or you would never have sent me such a ridiculous, insensitive message. Or maybe you would have because you feel it necessary to offer advice to people that you can hardly relate to. Having a friend of a friend with colon cancer does not make you an expert. What are you even doing on this forum? Don't you have better things to do? 

Your message, in general, is accurate but NOT FOR ME. I could have had a dozen colonoscopies during the 10 years before I was diagnosed with Stage IV colon cancer and still ended up here. The results wouldn't have shown a thing, not a single polyp.  So take your condescending advice and stick it!"

His response:

"My apologies."

Grrrr. I can't stand people that talk to me about stuff they really don't know much about. I shouldn't let it bother me, but it does. That's like me telling my mechanic how to fix a car. Redonk! I hope my snappy retort keeps him from sending a similar message to others. I really do.

I'll talk about my pet scan results and future plan of action after I calm down. 

Carry on,

Kristin

"Linkage ... Musings of a Med Student."

"More than anything ... I feel tired."

I really love this blog post. It's kind of fiesty, like me. But it's honest, and it's how I've felt a lot throughout my cancer journey. Thank you, Nikhil.

Carry on,
Kristin

"I'm done. I'm finally done. And things are different now."

So ... a few weeks ago, I finished treatment. The last/12th treatment made me so very sick, but I was so happy to know that I'm done with chemotherapy for a while. I was mostly relieved to give my sweet mother a break, to give my hub and chillens a break, and to give my shrinking body a chance to heal a little.

It's taken me weeks to feel good. My emotions are still pretty roller-coasterish. I feel like I've gained some friendships, and sadly ... I think I've lost a few, too. I mostly feel like I've lost a serious amount of time that I can never get back, days and days of fatigued-laced time that I can't remember.

But ... I'm focused on eating well and I'm planning to start "training" next week for a big vacation planned for October with my parents, in-laws, littles, and hub. I'm going to start walking daily, well ... let's say I'll be limping. My left foot is still a mess. But I need to start training to get my body back to a more healthy weight.

There's a cancer movie and a cancer TV show right now that are all the rage. I've decided not to watch either of them. Instead, I'm focused on my scheduled pet scan and my upcoming appointment with my oncologist to see where I'm at ... and what we're going to do next.

The video below is of me ringing the "I'm done with treatment!" bell. My dad Alan is the videographer ... I hug him last, but it doesn't show it. Enjoy.

Carry on,
Kristin

"Ten and eleven down, ONE TO GO!"

So ... I've been especially sick following the last two treatments. Why? I have absolutely no idea. The pain in my abdomen comes in waves so bad that it takes my breath away. I literally can't stand up straight when I have the pain. It sent me to the hospital last Friday night. I thought I was dying ... and at one point there, I wanted to die.

Please help me welcome morphine. Oh, how I love you. You make the pain stop, stop enough so I can relax my muscles and elongate my torso. If I had to choose a drug to become addicted to, it would be you, my sweet sweet opiate. 

But ... I'm not planning to become addicted to anything after next week, my last treatment, aside from good, clean food and exercise. I've only got a few months to prepare for a pretty big family trip and I will not let my health keep me from going with my family. I hope to recover from chemo quickly because I really feel like I've lost 6 months of my life. In so many ways, I have. Let's hope my first post-chemotherapy scan comes back clean so I can say ... IT WAS ALL SO WORTH IT. I can't wait to ring that "I'm done" bell.

Me just starting treatment #10.

My awesome son driving me to the clinic to get my bloody port flushed.

In good spirits before #11. (Low 130's for weight here. I have no muscles.)

My chemo friend Stan ringing the bell.

Carry on,

Kristin

"Neulasta, how I love/loathe you."

Wow, my last entry was a little dark. Let's change gears and poke fun at Neulasta, shall we?
"Pegfilgrastim (Neulasta) treatment can be used to stimulate bone marrow to produce more neutrophils to fight infection in patients undergoing chemotherapy." ~Wikipedia
Neulasta is a shot that my chemo nurse gives to me in my stomach the Saturday after each treatment. It doesn't hurt, the actual shot part. It's the afterwards that is super unfun. Basically, Neulasta forces my bone marrow to make white blood cells so that my immune system can fight infection. I've decided, after 9 of these injections, that my bone marrow doesn't like being told what to do.
Possible side effects ... there are two listed. One is bone or muscle pain. The other is injection site reaction. I've never had the latter side effect. But the first, oh geez. My back, like my spine bones, just aches. My hips and shoulder bones ache, too. My eyeball bone holes (occipital bones) hurt so badly when I yawn. Yes, my bones ache. And the best part of these bi-weekly shots? The $9200 bill that accompanies them.
But ... really, I'm grateful to be able to receive Neulasta. If I wasn't able to have them, I'd probably be infection-ridden and not at the very end of my treatments. So I will gladly lift my blouse two more times so I can finish my chemo like a champ.

Carry on,
~Kristin

"Nine down, three to go."

My treatments are getting harder. My prayers are getting longer. My "good" time has transitioned from days to hours. My legs are covered in bruises. My skin in gray. My hair is gone. My weight is nearing "wedding day" numbers. My smile is underused, my laugh nearly non-existent. My spirit is being tested like never before.

Dear God,
Make me a bird ... so I can fly far. Far far away from here.
~K

"My mom, my angel."

My mom is my angel on earth. It's so hard to verbally express the appreciation I have for the sacrifices she has made for me. She has changed her normal life-style to take me to my cancer treatments and she hasn't ever once complained. And when I complain, she's quick to point out how good I'm doing, how far I've come, and the progress I've made. I hope to be half the mother she is. I seriously couldn't do any of this without her. She's an angel and one of my best friends. I love her! (And my poppa, too!)

Always with me, by my side.

Carry on,

~K

This song is about my mom ... 

"Eight down, four to go. I hope I make it!"

My last treatment was a dooooozy! I'm serious, a real gut-wrencher. Merle was brutal this last treatment, burning all my fingers and both my feet, making my nose bleed relentlessly ... he's mad at me for something, I don't know. And then Saturday, I tried to shake things up by not getting Aloxi and fluids but instead ingesting a bunch of under-cooked Chinese take-out. For.the.love. I've never thrown up as much or as violently as I did the days following this last treatment.
All that puking landed my sorry self in the hospital again. Joy rapture. I was able to talk my super nice nurse into letting me actually sleep, so that was nice. AND I only had to stay one day. Another nice point to make, yes?
The fluids I received in the hospital helped the innard-purging to stop, but I was still so sick for days after.
In fact, today is the first day I feel even semi-well. I went out with the hub. We went for a drive and bought my daughter a car. It was a nice day, aside from looking like Gollum and getting winded like I was 90 years old walking from the car to sidewalk.
Last Tuesday was my worst day to date. I actually prayed for death. I've done this before ... one time, and I don't think that time I really meant it. Tuesday was a different story. I've been so emotionally worn out, physically worn out, sick of being sick, etc. Laying there, needing a shower, needing to feel okay to get up, needing to be able to open my eyes, I had had enough. I prayed to my Heavenly Father to make it all stop, to give me peace ... and he did.
My phone rang and I actually heard it. It was K, my go-to nurse at my oncologist's office. I cried instantly when I heard her voice and she talked me through what I needed to do to get some relief. Believe me, whatever this woman tells me to do, I do it. She hasn't once told me to do something that hasn't worked. So, Wednesday I followed her instructions to a tee, and sure enough, I started to feel better. Thursday night was even better, and today even better than that.
K has become a third mom to me. I struggle to call my mom on days when I'm super sick, or my mother-in-law, for that matter. My mom is with me during every single treatment and it's wearing on her. She's with me when I'm in the ER and admitted to the hospital. All of my medical adventures are so taxing on her, I just can't bear to call her during our "good days" in between treatments.
And my mother-in-law has just finished treatment for breast cancer, just finished as in her hair is still growing in. I don't want to burden her because I worry that it might bring back memories of her struggles during treatment and she has a scan scheduled this week.
So, K was my saving grace on this particular day. I'm so so grateful that she called. She is knowledgeable and compassionate and what she says is the truth. Right before we hung up, she said, "You're so close. You can do it."
I hope I can, K. I really hope I make it!

Carry on,
~K

My current hair style. ;)

"Linkages commencing .... now."

I wrote my will at 26. by Kevin Lankes
His blog is amazing. And I can relate to this particular post.

PS: I'm going to start linking to other blogs a lot. I'm finding some really good stuff to read online, now that I know where to look.

Carry on,
~K

"Seven down, five to go in Chemotopia."

I'm officially going downhill on my 12-treatment chemo adventure. It feels nice. My last treatment was okay, okay in that I tolerated everything pretty well. My hands are stable, my left foot looks better with each passing day, I'm controlling the pain most of the time, and my spirits are good. All little victories that will hopefully make the next five treatments just as tolerable as the last one was.
As much as I gripe about treatment, I'm still very grateful to be able to get treatment in the first place. I've been asked a handful of times, "Why did you chose to do chemo?"
Seriously? The answer is kind of simple. Chemo chose me. I've got late-stage cancer in my gut ... I didn't have a choice in the matter, really. I'm not against alternate medicine, I just don't think it's the smartest, safest, most reasonable route for me at this stage of my disease. And believe it or not, there are some benefits to being stuck in "Chemotopia".

~ Food awareness. I haven't eaten as much junk food as I did before my diagnosis. This is a good thing. And although I'm still losing weight, I'm much more conscientious about what I put in my stomach now.
~ Relationship awareness. I'm much more aware of the people in my life and how I treat them. I cherish time spent laughing with my dear friends and family, visits from my sister-in-law every Tuesday, phone calls from my mother-in-law, messages from my siblings, and holding hands with my mom. I cherish every second I get to spend with my kids and husband. They have all been so good to me. I'm so lucky to have the support system that I have. And in the same breath, I've been much more honest about relationships that aren't good for me. And although it's hard sometimes, I stick up for myself like I never have before.
~ Health awareness. I'm much more in-tune with my overall physical health because, duh. I have cancer. But now I'm more aware of how much sleep I get, how much walking I do, how many vitamins I take, etc. My body is going through the ringer every two weeks. Chemo is very hard on it. I'm very aware of how I'm feeling and I've learned valuable tricks to help me deal with my treatments as best as I can.
~ Time awareness. Before cancer, time was a commodity I never stopped to think about. Now, time is a very large part of most every decision I make. Do I have time for this? Do I want to spent X-amount of time on that? In the long run, will I look back and consider that time well spent? These are questions that I ask myself now that I didn't ask myself before.
~ Attitude awareness. Negativity affects me so much more now. I can't stand it. I hear complaints about trivial things and I want to grab the person complaining and smack them around a little bit. I'm much more aware of my attitude now. I'm not half as quick to complain about superficialities as I was before.

There are other benefits to chemo, like the fact that it is killing the cancer that is trying to kill me. So today, tomorrow, every day for the rest of my life, I will be grateful to be in Chemotopia and for the awareness it has brought to me.

Carry on,
~K

On my way ... half way done!

"CANCERsumption."

It's been a little while since my lost post. I went back to treatment last week. I went in with such a strong, good attitude following my heavenly chemocation that I was sure my chemo-cocktail would be more tolerable. I was kind of wrong. The hand-foot syndrome (the side effect that interrupted my treatment schedule), came on quick and fierce during treatment. I received 2 liters of fluids on Wednesday. When it was time to have Merle (5-FU pump) removed on Friday, I could hardly walk. I had another 2 liters of fluid. Saturday I limped into the clinic for my Neulasta injection, and even with another liter of fluids, I was in bad shape. I was floating, but really really sick. I ended up in the ER hours later with what I was certain was a bowel obstruction.
What a frustrating time for me. I was so sick, puking and in such pain, but I was being treated by people that knew very little about my situation. A radiation oncologist that consulted with the ER doc was certain that I had an acute infection. Forget about the 5 pounds of stool plugging up my gut ... the docs at the hospital were way more concerned with my white blood count. And even after myself, my mom, and my husband all told them that it was going to be really high due to the Neulasta injection I had had a few hours before, they still admitted me.
At first I was like, "Yeah, a restful, quiet night alone in the hospital." What a joke. The nurses, CNAs, and housekeeping staff were in and out of my room throughout the night. And I was across the hall from the service elevator. And I was on a floor with a couple of combative patients. And My IV kept kinking and setting off alarms. And ...
I could keep going but I just summarize by saying that two nights in the hospital and over 14 rounds of IV antibiotics later, I was finally released to go home. And the "#2" issue? Was never even addressed. Thank God it resolved on it's own, yes?

I came home feeling good, although laying in that hospital bed for 48 hours did a real number on my psyche. I imagined things about my cancer, dark things, good things, finite things that shot my already intense case of "cancersumption" to a whole new level. You see, I went from living a normal life ... to Cancerland. The day before Thanksgiving, I'm diagnosed with late stage cancer and then catapulted into Cancerland just one week later with a port and my first round of chemo. It was quick. It felt violent. And ever since, most of my waking moments, I'm consumed with my cancer.
I worry about it. I worry that I'll never worry about it. I stress over my future and all the things I need to get done. Cancersumption doesn't just take up most of my mental energy. It creates this ongoing feeling of urgency that has been hard for me to deal with. I feel like I need to get as much done as I can, as quickly as I can. My bucket list was overwhelming before my diagnosis. Now ... it's a monster with a time limit. Not much can tame this particular beast. But little victories sure do help.

I'm feeling really really good. Little victory. Even though not a single blood culture taken during my hospital stay came back positive for infection, I'm thinking that the gallons of antibiotics I was given actually cleared up my hands and feet. Another little victory. I had a shamrock shake last night. A creamy little victory right there. I've started a NEW bucket list, a more manageable, reasonable one. BIG little victory. My CEA marker is at 3.06. Little victory? I vote yes!
And they all add up. I've decided that during my inevitable state of cancersumption, I'm going to try to focus on the little victories in my life more that what I need to get done.

After all, just waking up in the morning, having my husband, mom, kids, family, and dear friends in my life, listening to good music, watching my favorite shows, and indulging in a sweet treat now and then ... those are all little victories that make Cancerland/real life a happier place.

Carry on,
~K

The only pic I took of my hospital stay. I think I ate this???

"Blankets and love."

I have been given many amazing "gifts" since telling my friends and family about having cancer, most of them in the form of sweet treats, care packages, loving notes, and good food. But much as I love the sugar, I love the three blankets I've been given even more.

The first one was given to me by my sister J. She made it for me to use during chemo, and I've done just that. Affectionately called my "chemo" blanket, I cuddle up with this blanket every two weeks while my body is pumped full of poison. And when I'm completely done with chemotherapy, which might be in May or it might be never, I'm thinking of donating this blanket to my chemo clinic for other cancer patients to use.

My "chemo" blanket in action.

The second blanket that I've been given was handmade for me by my best friend M's mom. This lady is one of the sweetest women I know. She is so giving and shows love and concern through service. The blanket she made me is bright and soft. And heavy. I love it! I use it to cuddle on my bed or in my recliner in the evening before bed. She used this, which is ahhh-mazing.

Soft, warm, cuddly. And adorable!

The third blanket I've been given was handmade for me by my friends/co-workers at the IHC clinic I worked at for 7 years. I adore this group of people so much. I have life-long friendships that started in this place ... with really amazing, smart, admirable people. The clinic manager and my friend L brought over the quilt along with a box of frozen food for my family. It was one of the kindest gestures I've received to date.

By the way, I love this quilt. It hangs on my banister and I use it to cuddle on the couch. It is all soft, warm and heavy. I'm thinking that the mink fabric used on this quilt (and the one above) gives it the weight, and I love it!

Isn't it beautiful?

The embroidered message ...

So as you can see, I've been very VERY blessed in the blanket department. Each one not only warms my body, but warms my heart. Yes, I know that sounds rediculously cheezy, but I don't really care. I feel the love from many important, caring people every time I wrap up in one of my blankets.

Carry on,

~K

"CHEMOCATION! Yes please."

I'm on a two week chemocation and loving it! My hands and feet are clearing up nicely, all my abdominal pain is gone, the nausea has subsided, and I'm sleeping like a princess. Less hair is falling out, too. Added bonus, yes?
But more important than the physical victories are the emotional ones that this break has created, for me and for my caregivers. My parents went on a short trip. Normally, they'd be wintering down in AZ right now. But because of my diagnosis in November, they opted to stay in snowy, happy valley to care for me. So the fact that they were able to leave town for a few days makes me so happy.
And then there's my hub and chillens. Oh what fun we've had the past few days together. This time, being happy and feeling good, is a glimpse of what I'm going to feel like after I'm done with chemotherapy. This glimpse has rejuvenated my spirit immensely. I think of it whenever I think of my next treatment. You see, fear consumes me when I think of treatment. I know how sick I'm going to get, how my body is going to ache and burn from within from the chemo, how I'm going to sleep away days of my life ... all while my husband and kids look on. This glimpse is the light at the end of the "cancersumption" tunnel I live in right now. This chemocation is truly a Godsend. Truly.

Carry on,
~K

"A break? Okay."

My treatment this week has been postponed. Due to this:

Hand-foot Syndrome. Grrr!

And this:

Eee-ouch!

I limp around right now like I've just had both hips replaced. There's literally no skin in the balls of my feet. Yes, it's a painful as it sounds.

But ... BUT! I'm feeling great and I get to do normal things for two weeks before my next treatment. This is a much needed break for both me and for my caregivers, especially my mom and John. They were both giddy leaving the clinic. My mom said numerous times, "This feels like Christmas."
Yes it does, mom. Yes it does.

Carry on,
~K

"Finally!"

I finally FINALLY have come to terms with having cancer. After spending some time today with a dear friend, I told her about something I recently read online. Normally, I don't find much good to read about cancer online. And what good I have read is quickly overshadowed by "bad stories". But today, today was different.
From a forum thread titled, "Recent Diagnosis with Stage 4 Colon Cancer" at cancercompass.com came a paragraph that has forever changed my outlook about having cancer.
"Research is coming out with more and more treatments all the time and the word 'terminal' has lost some of it's punch.  In 2007, I was told to get my affairs in order and it was like a kick in the gut!  No Doctor, or man, should tell anyone how long they have............that is God's business!"
Thank you, B. I don't know why what you said in your response has affected me so. Many people have offered me similar encouragement. Maybe it's how blunt your statement is. Maybe its because you're a colon cancer survivor. Maybe it's because I don't know you?
Maybe it's because ... my doctor has no idea how long I'm going to live. But my Father in Heaven does. I'm turning my recovery over to him and putting my faith and hope in his divine perspective. Thank you for the reminder of who's really in control here ... me and God. That's it. Me for the attitude and strength I possess while fighting the big C, and God for holding my life's plan.
You add at the end of the post:
"Have hope and Faith for a brighter future.  Talk to God on a regular basis; through the day and night, He is so awesome to hear our prayers.  Let people know you are sick and ask to be put on prayer lists."
I'm thinking we share the same faith. If we do or do not, your post have forever, FINALLY changed me during this time of my life.

Carry on,
~K

"Five down, seven to go. Whatever."

Oh goodness, there are so many things I could complain about right now after having endured my fifth and by far HARDEST chemotherapy treatment to date.
I could start by talking about my hands and feet, all four so messed up with cracks and peeling skin. The skin underneath the blisters isn't real skin, either. It's fake skin that has no elasticity or depth because chemo wants me to type with the erasers of pencils. I do have an awesome zombie limp going on though, since there's no skin on the ball of my left foot. Seriously, walkers have nothing on me right now.
Wait ... I could talk about my hair, or what's left of it. My baby sister and I love to sing like "Judice". Little did I know that someday, I'd look like her.

Or I could complain about how tired I am. Except that ... I'm too tired to complain about my fatigue. My life right now is many more "snooze" hours compared to "awake" hours. I can't wait to right this imbalance.
I could complain about the pain I feel, daily, throughout my torso. It's intense pain that makes me rock back and forth in an effort to comfort myself and cry tears, real tears that come from a place that hurts so bad, I don't know what else to do but to just break down.
I could complain about my mouth and the sores inside and out. Or maybe the fact that my body can't heal the way it should because my platelets are low. I know, a joint complaint about mouthsoreslowplateletsitis will do.
Or I could complain about my spirit and how unstable my attitude has been. I've been down following this treatment. Really.down. And I don't know why. The chemo is working and I'm learning how to tolerate the treatments better. Still, I tend to get weepy and emotional pretty quick these days. I hope this funk I'm in goes away soon.

But for now, I'll keep my complaints to myself and just survive. Survival is my main mode of operation these days. Survival and sleep.

Carry on,
~K

"Isn't that great news?"

I got some phenomenal news yesterday in the form of a blood test result I read on my online medical records. Every so often, my oncologist performs a CEA blood test. CEA stands for Carcinoembryonic antigen. When the serum levels are raised, this test can be used as a tumor marker in clinical tests, primarily with metastatic dissemination of colon carcinoma cells. A normal person without colon cancer will have this marker read approximately 2.5 ng or less when tested. (Please note that I'm no expert. What I state throughout this blog is how I understand things.)
So on 11-13-13, I had my first CEA levels drawn. 42.15 ng. Ouch! That's high. Yep. I have colon cancer.
Then on 11-27-13, my CEA registered at 35.56. Yes, it's gone down. 
Enter 12-18-13. This CEA reading upset me. See? I blogged about this already. It ran at 43.55 on that draw. Despair.
But ... but! My CEA levels from the blood draw on 1-15-14 read ... drum roll please ...
5.9.
Five point nine! 
Can you believe it? 
The chemo is working. All of this is working. I was sitting with my husband when I read the test results. He teared up he was so elated. (Sorry J, had to share that.) I told both my kids and called my mom. I texted my bestie and close friends. "Isn't that great news?" 
"Yes!", all of them said, rejoicing with me.

I have a renewed faith in what I'm doing here, and for the first time, I feel a new sense of strength to better handle what my healing, shrinking body is going through. Why? Because my cancer treatment appears to be working ... and I don't want to jinx it. Happily, I can see reason, purpose, and a light at the end of my chemo-tunnel. Isn't that great news?

Carry on,
~K

"But my colon is clean."

Do you know how many times I've said those five words in the last two months? Probably a hundred. No, a thousand. Why? It's simple, really. My colon is clean, and I'm talking really clean, not a single polyp or red spot of irritation. Yet I have stage IV colon cancer. How does that happen? I'm still wondering what twisted works my body was going through when the metastatic mass in my abdomen formed and started growing.
I've been asked a lot how I was diagnosed with colon cancer when my colon is completely free of active cancer cells. It's kind of hard to explain. I try to revert to what my oncologist Dr. W. said to me at least 5 times during the appointment when I was diagnosed. "I always bow-down to pathology."

Let's review what some of the reports and pathology has said, shall we?
" The mass returned as metastatic adenocarcinoma with a histologic and immunohistochemical features suggestive of colonic primary. She had colonoscopy performed on Monday, November 11. This showed no colonic neoplasm."
"The histologic features and immunohistochemical profile favor colonic origen. Pancreaticobilliary origen cannot be excluded but is not favored."

"Immunohistochemical stains are received back from ARUP on 11/4/2013. This staining pattern argues against breast, lung, renal cell, adrenocortical, endometrial, ovarian, salivary, bladder, mesothelial, and hepatocellular carcinomas. Pancreaticolbiliary origen remains in the differential. Colon origen is favored."

"41-year-old female with what appears to be metastatic colorectal cancer with undetectable primary by colonoscopy. Her PET CT scan results have been reviewed in detail. Molecular classification by bio-theranostics returned as a 96% probability of colorectal adenocarcinoma."

What does all of that mean?

I honestly don't know. It's hard for me to understand and even harder to explain. When I try to verbalize how I have advanced colon cancer but a clean, intact colon to my close friends and loved ones, I struggle to find an explanation that makes sense ... to them or to me. I chuckle and stumble my way through a lay-man's rendition of my situation. But most of the time, it just confuses me and my listener. 

Sigh. I have colon cancer. But my colon is clean. I count myself lucky on the latter, knowing that colon surgery/resection/removal will not be a part of my cancer treatment plan. I'm lucky to never have to deal with a colostomy. Really, I'm lucky on many levels right now.

But I often wonder if it would've been easier, less confusing and shocking, had they found a tumor in my colon. At least it would feel more validated, more understandable. Maybe I'm still in shock. Maybe not knowing where the mass came from nor how it started is a good thing. 

For now, my plan is to keep in control of my pain, my digestive system, and my emotions. I'll mock having "old man poop" cancer for now, knowing that my colon is clean and the cancer is hopefully dying.

Carry on,

~K

"Four down, eight to go."

Hoping that treatments would become more tolerable, I'm deeply saddened to announce that my last treatment was a suck-fest. So many things that could've gone right, didn't. I received a blood transfusion ... that I didn't need. My 5FU hates me so badly, this hate manifested in my hands, feet, and mouth. (I will have my 5FU dose reduced during the next treatment. If I don't, it might kill me.) During the 46 hours with Merle, I threw up a lot, more so than normal. My fingernails look like I'm a chain-smoker. And my hair is still thinning. It's everywhere, quite literally everywhere, except where I'd like it to be.
But I promised myself I wasn't going to do a play-by-play for this mistake-ridden treatment. Instead, I'm going to mention the brighter points of #4. I seem to have recovered quicker than I ever have before. I'm learning to stay on top of my pain and my digestive tract. I'm learning how to pace myself so that I'm not napping from 2 to 8 pm every day. These things are very good.
My emotions seem to be evening out a little, too. I get down sometimes, very very down, but I'm quick to bounce back and remember all the good things I've got going for me.
I've got my mom, my rock, my constant through treatment and recovery that keeps me focused on "May 9th" and remission. My mom reminds me that I will go into remission someday. This has been huge for me. She is so sweet. She has very little hands. When I was getting my IV for the blood transfusion, she wrapped both her hands around mine. The were soft and warm and in my focus on them, I didn't notice the needle stick. I have to mention my "poppa" (stepdad), too. He has been so good to me, driving me around, making sure I get to my treatments in bad weather, picking up food and treats ... the list goes on and on. But the most important thing he does for me is that he loves my mom. He supports her and cares for her, which is why she is able to focus on me so much right now.
I've got my husband, John. Not one time, not even in his most tired, frustrated moments has he been short or frustrated with me. Oh I'm sure he feels it inside, but he hasn't shown it, not one time. He's become both father and mother at times over the past few months, and our family has greatly benefited from his fortitude and ability to get things done. He rubs my hands and feet at night. He gets me ice packs at 2:45 am without complaint. I know for a fact that my world would crumble into chemo-hell if I didn't have my husband, my glue, holding everything together.
My kids, both teenagers, have been an unbelievable source of comfort and cheer for me. My son is willing and eager to help me. He wants me to be comfortable and I can tell it bothers him when I'm sick. He's funny. He makes me laugh daily and he's one of my very best friends. My daughter is one of the best distractions in my life right now. Her ability to mentally remove me from my "cancersumption" is amazing. She talks and talks, not about cancer or chemo, but about trips we've taken, things we've done, trips we want to take, and things we want to do. Without the love and support of my children, this adventure would suck a thousand times more for sure.
I've got wonderful siblings, extended family members and close friends that stop by to check on me, drop treats off at my front door, send me messages of encouragement, and extend genuine sentiments of hope and love. My beautiful sister-in-law brings my family dinner every Tuesday night. (My family looks forward to Tuesdays because of the food. I look forward to seeing my sis-in-law and handsome toddling nephew.) My close friends and bff text and call daily. I can't imagine navigating "CancerLand" without my incredible support system of family and friends. I know my treatment would greatly suffer without it. The encouragement I get from others has really made an huge, positive impact on my attitude while in chemotherapy.
Now for some photos:
This is what I see when I look around me during treatment. Don't be jealous of the view ... I know it's truly awe-inspiring.

Poisons ... lots of them. Yummy.

Here comes the blood.

"Vampires are stupid." ~Creed Alexander

5FU Hand-Mouth Syndrome. Good times.

Fluids, chemo's "bully".

Me and my favorite blanket at the end of #4.

Carry on,
~K

"The chemo made me do it."

Abstract art = NOT

See this picture? No, it's not an abstract piece of art work. Its my hair ... in my toilet ... for reals.
I'm not expecting to lose all of my hair, but I'd dare say that I've lost 50% of it. Yes, I have a lot of hair. Most people can't even tell that I've lost so much hair. But even so, dropping handfuls of hair in the toilet after each combing has been beyond disheartening for me. It's been kind of heart wrenching, actually.
So my mom suggested that I cut my hair, to lighten it up and make it more manageable. I've read online at a couple of my cancer support sites that shorter hair doesn't look as abundant as longer hair does in the garbage can, either.
So, I went to my hairstylist of a decade, M, and had her cut 5 inches of thinning hair from my frizzy mane.

Before

Sitting there watching her chop off curly locks of my dark hair, I suddenly said, "The chemo made me do it."
M laughed. So did the others in the salon. I chuckled but internally sighed. It's true. The chemo WAS the reason that I was cutting my hair. But I hated the feeling that I was in a roundabout sort of way forced into it, forced because it's too painful to watch it thinning away to nothing.
Standing in my bathroom after I had dried my newly-cut coif, I decided that even though the chemo inspired it, the new do was a nice change. I've had really long hair for years. The light, easy, soft length feels good.

After

My thoughts then went to my mother-in-law. Just finished battling breast cancer, her hair is finally starting to grow back. It's thick and beautiful now, but for months, it was gone. My thin, short hair suddenly became a reminder of how lucky I am in certain aspects of my treatment. I really don't want to lose my hair. I still might lose it. But I'm 100% certain that I'd rather be alive with thin or no hair then dead with long, flowing locks.

Regardless, I've decided that the statement, "The chemo made me do it," is going to work for lots of stuff, like when I forget important dates, lose my phone, spill dinner on me, or cuss. After all, it's partly true. Chemo is deeply embedded in my life right now ... whether I want it to be or not.

http://www.customblingapparel.com/category_20/Cancer-Sucks.htm

Carry on,
~K

"Three down, nine to go. Are you serious?"

**Amended/corrected 1-27-14.

Blegh. That's all I can really say about my third chemo treatment. Blegh because I received my first dose of ... *dun dun dun* ... AVASTIN.
Oh, dear Avastin, I don't think I like you. I know that you're strong and that you're going to kill the cancer inside me. I'm appreciative of your mission, I really am. But did you have to mess up my hands and my feet?

**This is actually a side effect from my 5FU. It's too strong, and I need to have the dosing reduced.

Hand-foot Syndrome, courtesy of 5FU.

Did you have to cause me abdominal pain that took my breath away and fatigue so intense that it hurt? Did you have to bring on waves of nausea so brutal they made me panic? Did you have to coat my tongue, mouth, and throat with white fur? That fur makes swallowing a less than spectacular task, I must say.

**I'm thinking all of these side effects are really from Avastin, especially the pain and unbearable boughts of nausea.

Mouth fur - awesome!

Along with my first taste of Avastin, I had my first encounter with a unsavory individual at the infusion lab. Enter *Jim (*not his real name). Loud, rude, obnoxious, inconsiderate ... those are the best adjectives to describe this man. He came in the lab awhile after I did and, of course, he chose a chair across from mine. After threatening to "clock" the nurse administering his IV if she hurt him, he didn't waste a moment in finding someone to talk at. The young kid to my left only had to answer one question and Jim was quickly on a roll. My poor mom and I learned all about Jim's family; his kids moving out of the house, his wife moaning because she had to go back to work, and his "400" guns. We also heard about Jim's Crones Disease. After listening to him describe his "bloody bowel movements" for over an hour, I was seriously beside myself. I declined an additional bag of saline just to get away from him. My mom went down to get the car, and as I slowly put my coat on, he looked up at me and loudly said, "Well you didn't handle yourself very well today, did you?"
I glared at him. I couldn't let the words cocked on my furry tongue from shooting from my mouth.
He shifted in his chair. "My and Jackson there, we've got Crones Disease and we handled our treatment okay."
I couldn't help myself. I pinched the verbal hammer. "Well, I have terminal cancer." My scowl grew angry with my tone. "So, stick it."
I turned and walked out, leaving Jim, his tall-tales, and Jackson in the infusion room to deal with my retort.

This is what Jim looked like, I kid you not. 

Even with all the new and intensified side effects that I've dealt with after my third treatment, I'm counting myself very blessed. I'm lucky that I get to have treatment, yes the 5FU, Avastin, and Neulasta included. I'm thankful that my body is healthy enough to withstand chemo at all.
Even more so, I'm blessed to have my mom with me during all my treatments. She has been so strong and I honestly don't know if I could do this without her. I'm equally blessed to have my husband, kids, best friend M, mother-in-law, siblings, and close friends supporting me when I'm at home recovering. Some cancer patients don't have a support system like I have. Some don't have good insurance or they aren't healthy enough for treatment. I remind myself of these facts every time I get discouraged.
And just to set the record straight ... I don't think that my cancer is "terminal". I just use that word when I mess with people that say stupid things to me. Really when you think of it, every human is "terminal". No one lives forever.
And since I can't end a blog post on that note, I'm going to post one of my favorite quotes:
"In the end, it's not the years in your life that count. It's the life in your years." ~Abraham Lincoln.

Carry on,
~K

"Tattooed Spoons"

My younger sister J suffers from a chronic illness. She lives far away from me, about 3.5 hours by car. I miss her. And because she and I are both dealing with health issues right now, she's become a great source of information and insight for me during my treatment. Recently she sent me a link to an article that I found most interesting.

The Spoon Theory

After reading the article I realized that unlike J, my side effects and fatigue and nausea will someday go away. Her symptoms will not. Someday, I won't be counting spoons. I'm sure J will always have a number in her head from one day to the next. My chemo will end, but her lupus will not. Those facts are very VERY disheartening to me.

J has a strong will about her and a wonderful little family to fight for. And like me, she often times mocks her condition. We do this to keep things light and in a twisted way, positive. She mentioned that she had heard of Lupus patients tattooing spoons on their bodies, little inked reminders of their will to survive. We agreed that we're not ready to go tattooing eating utensils on us, but instead will support eat other daily through text and phone calls.

Still, you never know what the future holds, right?

threekingstattoo.com

Carry on,
~K